Sharon’s Story - How Advance Care Planning Helped Family & Friends After a Devastating Diagnosis
Sharon Malenfant, shown here in a 2015 photo featured on the cover of her book, “Other Dreams, Other Times.”
April 18, 2019
By Kathy Bennett
NORTH CONWAY, NH - Sharon Malenfant of Tamworth, NH, was just 65 years old when she developed puzzling symptoms that her doctors were challenged to diagnose initially. First, she went to a Ear, Nose and Throat doctor as her symptoms involved her sinuses. Then troubling issues with her eyes brought her to an Opthamologist. While she was hopeful the problem was a chronic sinus infection or nerve disorder, a visit to an Oncologist lead to the real diagnosis - lymphoma. Sharon fought hard to beat the cancer, undergoing treatments including chemotherapy and immunotherapy. But she also ensured that her friends and family understood her preferences for end of life care by completing advance care planning years earlier. By selecting a team of family and friends to make decisions for her, she was able to safeguard that her wishes were respected, and her caregivers felt they made the right decisions for her.
According to the National Institute on Aging, advance care planning is not just about old age. At any age, a medical crisis could leave a person too ill to make healthcare decisions. Planning for health care in the future is an important step toward making sure you get the medical care you would want, if you are unable to speak for yourself and doctors and family members are making the decisions for you.
Sharon was relatively young to be facing a terminal illness. After years of caring for her husband, who had died two years earlier from an ALS-like disease, she was just moving forward with her life, planning to travel and enjoy retirement. But as someone who had worked in healthcare for much of her career, as Vice President of Community Relations at Memorial Hospital in North Conway, NH, she was familiar with advance care planning and the importance of letting your wishes be known before illness strikes. In fact, she had advocated for the concept of advance care planning in her community and facilitated training to educate healthcare professionals in its use 25 years earlier.
Without a spouse or family nearby, Sharon was fortunate to have close friends to rely on. In addition to two family members from out of state, Sharon named Sue Ruka, RN, PhD and Sandy Ruka, RN, MS as her Durable Power of Attorney (DPOA), to make healthcare decisions for her should she become disabled.
Sharon had asked Sue years ago to be her Power of Attorney after the untimely cancer death of a mutual friend. She wasn’t sure if her husband would be around due to his illness.
Sue stated, “The key part and what makes her story unique is that she did not have that significant other that knew what she wanted. We all realized that none of us knew her in totality. She was really wise in that she chose a team of friends and family. She was a single woman, fairly isolated for many years, a very private person, very bright and articulate. The care team she selected to make her decisions included her cousin, 17 years younger and living on the west coast, as well as her sister in law in Rhode Island. Then Sandy and I had her healthcare proxy, given our background as nurses. If any one of us had been designated on her own, we would not have been able to give her the end of life possible given the complexity of her illness. Choosing me and Sandy, we were able to explain the situation to the family. But we wouldn’t have wanted to make those decisions that came to bear without family input.”
Sharon’s story brings to light a little known aspect of Advance Care Planning - that you can include multiple people with different roles to ensure your wishes are respected.
Another point Sue emphasizes is the need for good communication in advance so everyone knows what you want. “At one point, I had to make a decision about treating pneumonia. I was able to talk to her provider, and her family, and we collectively decided to forego antibiotics. This is what made her situation unique. She died in the end, but we all felt that we worked as a team and the right decisions were made. Talk to people about what you want. Have better conversations.”
A recommended tool to get those conversations started is the “Go Wish” card deck. Sue explained, “Many people say ‘I know what I don’t want’ but there’s a lot of other things, other than ‘not being on a machine’ or ‘not being brain dead.’ One card is ‘I want my family to be at peace with each other’ or ‘I don’t want to be a burden.’ But what does that mean? A financial burden? A care burden? It’s a lot of decisions.”
In considering treatment decisions, your personal values are key. Is your main desire to have the most days of life? Or, would your focus be on quality of life, as you see it? What if an illness leaves you paralyzed or in a permanent coma and you need to be on a ventilator? Would you want that? You can use the “Go Wish” cards to help define what’s right for you.
The “Go Wish” cards are sold in the gift shop at Memorial Hospital, or can be purchased online at http://www.gowish.org/.
How to Get Started
According to the National Institute on Aging, it might help to talk with your doctor about how your current health conditions might influence your health in the future. For example, what decisions would you or your family face if your high blood pressure leads to a stroke? You can ask your doctor to help you understand and think through your choices before you put them in writing. Medicare or private health insurance may cover advance care planning discussions with your doctor.
If you don't have any medical issues now, your family medical history might be a clue to help you think about the future. Talk with your doctor about decisions that might come up if you develop health problems similar to those of other family members.
Local Resources for Advance Care Planning
Visiting Nurse Home Care and Hospice of Carroll County provides free advance care directives to community members at their offices and at other locations around the Valley. Call 603-356-7006 for more information. Getting Advance Care Directives completed is a relatively simple process and can be done at no cost. The important part of completing an Advance Directive is the conversation that happens as a result of the process of completing the directive. Trained facilitators are skilled at encouraging conversations about what what care and treatment may be desired but many other variables that can be discussed and decisions made. It is important to remember that a health issue can happen at any time and at any age.
For more information about VNHCH services, visit the website at www.vnhch.org or call 603-356-7006 or 800-499-4171.